I feel like I’ve been ‘gone’ for ages. But I’m back, after four (?) weeks of resting, teaching, discussion — and investigations into my body’s insistence in going off piste.
First, we went away for a few days. I painted my nails pink. More on pink and what this means to me in another post!
Second, I participated in several weeks of a research project being carried out by the Dentistry School at the University of Bristol — with the aim of a co-produced outcome between survivors of Child Sexual Abuse activists, and academics, all of us keen to improve access to dentistry for survivors of CSA. More on this incredibly worthwhile endeavour in another post. And watch this space for the first outcome!
So to my health. Regular readers may recall that I’ve been dealing with nighttime coughing and choking episodes since January. After numerous interventions (two rounds of antibiotics, steroids, change in asthma treatments) and tests (peak flow, CT scan, X-ray), my own instinct was that something in me had been ‘triggered’ and had gone into ‘overdrive’. Fortunately, and finally, a GP in my surgery contacted me, remembering that she had had another patient with similar symptoms. She wanted to refer me to an allergist/immunologist, as it was also clear that I had an ‘allergic disposition’.
I decided to go privately, as the wait on the NHS was likely to be around nine months. My own instinct (and that of my GP) was that this was somehow related to my mast cells (a theory I raised a month ago on this blog). It took me three days, but I found a formally trained allergist who openly declared an interest in mast cell issues.
In preparation for the tests he wanted to run, I had to come off all antihistamines. I have been taking two one-a-day antihistamines for years. Coming off of them produced a TON of nasty things: sweating, all over body itching, a low fever, headaches etc. Interestingly, my chest did NOT worsen. But clearly: the antihistamines were suppressing a LOT that I was unaware of. I had one set of tests, then a few days later had to come back off the antihistamines again. This time I had dramatic joint and muscle pains, incredibly painful. Argh.
However. Long story not-so-short: blood tests, patch tests, and skin prick tests later, a bit of a shocker. It looks like I am allergic to NOTHING (nothing we found, anyway). I have been having ‘allergic type’ symptoms for 30 years — hayfever, asthma, various food intolerances — which have gradually worsened to the point of being quite debilitating… and yet I’m allergic to nothing. What IS evident though is that something is driving my symptoms: the overall antibody level (Ige) is significantly raised, indicating ‘allergic’ response levels are raised regardless.
My consultant says this is actually quite common. I have very reactive skin (without enough antihistamine, I always itch and have various random bumps etc. I also have ‘dermatographia‘, harmless but indicative of high histamine skin). My histamine levels (produced by mast cells) are ‘agitated’, and seem to have become increasingly so over the years. Apparently, mast cells are making more and more histamine — with no external trigger. [A side note: interestingly, there is clear research around how when countries are developed, and infection rates drop through vaccines and antibiotics, ‘allergy’ issues rise. The working theory is that the immune system develops differently (partly due to hygiene practices), thereby reacting differently to the environment. Which goes some way toward explaining why ‘allergies’ are often considered ‘posh’ things which aren’t taken seriously: because most seem to originate from a ‘more affluent’ lifestyle.]
Anyway. It turns out that most people who experience what I am experiencing are women. Most are middle aged, middle class, and make efforts to be healthy in their lives. Like me. And yet: something in their bodies seems to be constantly in ‘fight or flight’ mode, essentially.
I’ll let that sink in.
Did I mention CSA to this consultant? Yes I did. Did I outline the statistics? Yes I did. Did I make clear that there is research which shows that CSA survivors are much more likely to develop inflammatory conditions, autoimmune conditions, and chronic conditions? Yes I did. We talked about how the immune system seems to shift with trauma, physiologically. He was open, interested, and listened. He believed me.
So. My guess is that my chronic uticaria/mast cell activation springs from childhood trauma. I don’t like those apples at all, but I suspect this is the root of it. I suspect too that the several thousand of mostly women my consultant has treated for this have also undergone some kind of trauma — be it serious illness, domestic or sexual abuse or neglect. And the body (which keeps the score) has reacted like this.
That’s the super irritating news. The good news is that with several months of high dose antihistamines and montelukast (Singulair in the US), my agitated system is very likely to calm down enough to be able to very much reduce the meds or get rid of them completely. This is his experience. He also (wisely) advised me to stop trying to ‘figure out’ triggers; this in itself can ramp up the system, which intensifies reactions. This all makes sense, and I’m now enjoying NOT worrying about what is ‘setting me off’!
As I’m only now confronting the lasting physical ramifications of my childhood, there is little in LEARNING TO SURVIVE which considers it directly. This though from the end of the book does capture the sense that you don’t ‘get over’ abuse. You can’t. It stays with you, in many forms. What we strive for is how to manage it, and how to live well in spite of it. We are the ones who have to learn to live with it all.
My own father died unexpectedly in October 2018, while I was in the middle of planning this book. He was an abuser. I am a survivor. That isn’t all he was, nor is it all I am. But it has shaped me and continues to shape me, no matter how hard I have tried and continue to try to keep it away from what matters. I do not know and now will never know the extent to which his sexual obsessions shaped him, but I am also, unsurprisingly, not sure either the extent to which I care.
I have for the most part grown around the deep-running grief and betrayal that I can name. But after years of saying (perhaps more in hope than belief) I am ‘past it’, that I am ‘totally fine’, I now accept that the legacy of abuse never ends. You never ‘recover’ to the point of completely letting go. These days I ask different questions – no longer why and why me – but rather: who would I be if this had not happened? What might I have written, done? Who would my brother and sister be? And my mother? My aunt? My stepmother?
And then, of course: how has the abuse affected my own children? All aspects of my relationship with my husband, and the way we live our lives? The things I am afraid of, the things I can’t explain. The lasting sense I have that life is fleeting, and apt to disintegrate. And that I must always be prepared for the worst to happen. That what I think and feel, when it comes to it, aren’t of real significance. Would these anxieties still be here? And if not, might I have taken more risks, been more ambitious? Had, more so, the courage of my own convictions?
I have no answers to these questions, and never will. There remains so much, so much I don’t know and will never know, and despite my survival, all of our survivals, there is so much too with which I will never be at peace. And there is so much loss. The ripples of my father’s paedophilia, his deluded selfishness, his refusal to accept responsibility, go on and on, and continue to damage all of us, and all of our loved ones. When the ripples hit the shore, they just come back again. They never disappear. It is this fact which brings the most despair for me, and these days, anger.
This book emerges here and now partly because this is a story I need to tell, like all stories which find a writer. This book is also here, I hope, partly as a way of helping to make the invisible, visible. To help stop this. To be seen, and heard: I am here. We are here.